Associate Professor WAKIMIZU Rie, Faculty of Medicine

An illness or disability is a serious problem for not only the affected person but also their family. It is especially hard to imagine how worried a parent would be if their child had a disease that could recur if not cured completely. Patients can get support from staff such as doctors and nurses while they are hospitalized, but how should they be supported after their discharge or before their diagnosis? Prof. Wakimizu is working to provide care based on firsthand research for children and their families.

Nursing care is usually provided to patients who are being treated at a hospital or at home. However, particularly in the case of pediatric patients, it is common for concerns about disabilities or recurrence to remain even after the patient is discharged or cured. Unfortunately, the social support provided to families in such situations is inadequate. Moreover, children with unique conditions or chronic disabilities and their families have highly unique and varied situations. Prof. Wakimizu is working to develop evidence-based family care models and put these care methods into practice by conducting qualitative and quantitative research on the individual life situations of families of pediatric patients.

For example, one of her research questions is, "What is life like for families of children with developmental disabilities?" She studied the families of 350 disabled children who were diagnosed with a developmental disability as an outpatient and were receiving outpatient treatment. The average age of the child when their mother realized that her child might have a developmental disability was 26.1 months. Over 70% of mothers realized that their child had a problem before they were 3 years old, with about 20% realizing before they were 1 year old. The mothers' mental conflict began after that point. Many mothers could not share their concerns with their husband and relatives or were plagued by guilt for giving birth to a disabled child. In the same study, the average age of the child was 45.9 months when they had their first outpatient consultation and 67.7 months when they received their first diagnosis. Thus, the average time gap between initial realization and diagnosis was a long 41.6 months. During this time, many families just kept their worries to themselves. Considering how these families suffer, Prof. Wakimizu proposes that it is ideal to assess the family situation before a definitive diagnosis is made and to casually approach the family and start offering them support at that point.

Families of children with severe disabilities experience even more serious challenges. Particularly in the case of children with serious congenital disorders, it appears that mothers feel extremely guilty for giving birth. In many cases, their relationships with their husband or other family members deteriorate. Older siblings who are close in age are often psychologically damaged as well. It is not enough for immediate family members and relatives to support each other; society must support families as units. Prof. Wakimizu has conducted questionnaire surveys and interview surveys of parents and siblings of children with severe disabilities who are living at home. Surveys she is conducting in collaboration with groups such as patient organizations, rehabilitation centers, and the outpatient clinic of the university hospital provide useful data. This is especially true for the interview surveys, in which the trusting relationship Prof. Wakimizu has built with participating mothers, fathers, and siblings often allows them to reveal feelings that they cannot even share with their family doctor.

Figure 1 A nursing intervention and support model for promoting families' self-care capacity

In this process, Prof. Wakimizu focuses on two things in particular. First, she accurately assesses the family's "self-care capacity" (Fig. 1). Second, on the basis of that assessment, she evaluates the family's "empowerment" status or process (i.e., how or how well family members control their own lives in order to raise their child with health problems and work with external groups such as other families, service systems, or society) and determines how to initiate an intervention if necessary. Once a family's self-care capacity and empowerment process is understood, it is relatively easy to determine what support would be appropriate and to provide that support. In 2010, Prof. Wakimizu developed a family empowerment scale based on caring for families of disabled children and to fit with Japanese culture. Going forward, it will be necessary to further expand social support systems that are familiar and convenient. This could include approaches such as providing respite for families (i.e., reducing parents' physical and psychological fatigue by having another person care for their child temporarily) or mental health education for siblings.　

A picture taken by the child's mother at a hospital (It is posted with the mother's permission.)

Prof. Wakimizu loves children and has admired kindergarten teachers and day-care staff since she herself was a child. However, she chose to study science in high school at the recommendation of a teacher. Though she was also accepted into medical school, she instead enrolled in the Faculty of Science at the University of Tokyo and majored in health science and nursing. She could also have entered public administration or private enterprise, but her experience participating in a nursing practicum at a children's hospital pushed her in that direction. She decided to care for families of pediatric patients in a clinical setting while conducting research in this area after growing attached to the idea of standing alongside and helping out little patients fighting with all their might and their families. The graduate school where Prof. Wakimizu works started training nurses specialized in family support in 2014. She has also started conducting surveys and intervention research regarding care for parents concerned about child-rearing as part of a project aimed at abuse prevention. By working closely with participating families, she has been able to meet even more new people including professional colleagues. It seems that there will be an even wider range of research projects centered on families in the future.

Prof. Wakimizu gets many opportunities to give presentations as well.

Article by Science Communicator at the Office of Public Relations